I doubt there’s a patient in the World with an invisible illness that hasn’t heard the phrase ‘but you don’t look sick’. I’m one of the ‘lucky’ lupus patients in the fact that I rarely look sick. I’ve only ever had one visible rash and that was on my legs otherwise I usually have no outward sign that I am actually ill.
I say ‘lucky’ but it’s a double edged sword. On one hand I’m pleased that I rarely look ill so that I can pretend that I’m ok around other people and not have to constantly explain lupus to them. I also obviously don’t want to walk round looking like death all day. On the other hand, when I feel dreadful and for example would like a seat on public transport, there’s little chance I’ll get it. Or when I just haven’t got the strength to do something or go somewhere I have to explain why, if I looked ill or turned green when I had a flare I wouldn’t have to do that.
When I hear the phrase ‘but you don’t look sick’ I do wonder if people believe that I have an illness let alone a chronic, painful, incurable, possibly life threatening one. Do they think I’m a fraud or exaggerating? Do we have to prove we have an illness? What do they want us to look like? Infact what does ‘sick’ look like exactly? This sometimes leads to comments on things like people parking in disabled spaces. Michael McIntyre described this well in one of his sketches, what are we expecting when the car door opens, the person drops to the ground and crawls to the supermarket? Another curse of invisible illness.
Having an invisible illness can also cause problems in the workplace. Not everyone has understanding bosses/colleagues, they probably don’t know what lupus is, how painful it is and how suddenly it can attack and literally knock you off your feet. If you have to stay home do they think you’re just having a day off and you’re catching up on housework or having a lovely time socialising, it’s very likely that we barely managed to get off the sofa all day. Because of the lack of understanding people often push themselves too far at work worried that they might lose their job as people don’t believe they’re really sick.
This is exacerbated by our need to ‘carry on’ despite feeling absolutely rubbish, life goes on, we have responsibilities and we often have to just ‘get on with it’. Sometimes we have no alternative but to do that, I like quite a lot of people, have no partner/family to help me, so have no choice but to carry on no matter how I feel. If people see us doing that it further reinforces their idea that we aren’t actually sick, so we just can’t win.
On the rare day that I do look pretty awful, usually during/just after a bad flare when I look ghost like, dark rings under my eyes etc, I resort to make up otherwise I’d frighten people. I could go straight out on Halloween, no make up needed though so that’s a bonus!
So when we do look sick we cover it up, physically and with a cheerful disposition, we’ve become accomplished actors. Maybe it is slightly down to us that people think we don’t look sick, but when you feel horrible you don’t always want to look that way too as that’s even more depressing.
If you’re reading this and feel the need to say ‘but you don’t look sick’ to someone, think again. We may be hiding behind a smile, but it’s likely we didn’t sleep last night, are taking countless pills to try and keep lupus calm and are in pain constantly. In reality we are very sick, we just don’t always show it.